HERO Stories

[katie's mom]

This is by far one of the all-time best epilepsy threads ever!! Thank you all so much for sharing your inspiration!!

I don't have any dramatic rescue stories but so many compilations of day-to-day faithfulness of family, loved ones & forum friends who have helped us get through the often helpless ordeal of having a child with epilepsy. My top heroes would have to be my husband and my mother-in-law. My husband is such a devoted father and does everything that he can to make sure that Katie's life and future are as bright as possible. He has never once wavered in his commitment to seeing Katie through this battle. Watching our daughter's mental & emotional being change & slip away for several months has been extremely painful for both of us and not always easy on a marriage but somehow we have managed to stick through this together and he deserves a lot of credit for that. I know of many men who would have either emotionally shut down or walked out under the pressure, but he has dug his heels in and been the rock that we have all needed. His biggest hero moment for me was the day when we had come home from our 1st appointment with our dietician to initiate the Ketogenic Diet for Katie and he insisted that we step outside to witness a rare and breathtaking vision: a majestic and gigantic rainbow stretching from the mountains in the distance to our own small hill. He said, "Look Katie, it's your rainbow."

My mother-in-law definitely gets a special mention. Most mother-in-law's aren't reputed as the most benevolent types but mine is a SAINT. Not many mother-in-law's would have accepted someone from a totally different background without much of a family of my own and accepted me pretty much as her own daughter without reservation. She cares for Katie during the day so that I can work and keep our health insurance - something we could never pay anyone to do during all of Katie's daily and often day-long seizures. She never complains about the freedom, time, and money that she tirelessly sacrifices day-in and day-out to help pull our family through tough times and she is always there to pick me up when I am at my wits-end. So many times she hears my voice and says "I'm coming over right now to help." Where would I be without my beloved mother-in-law? She is truly a gift from God!!

I also can't fail to mention that all of the people on Web sites like this who are taking their struggles and sorrows with epilepsy and using them to help others are heroes that I deeply admire and always think of every day!! It is hard to express the comfort provided by knowing that others understand what you are dealing with!! I also owe a special thanks to the parents who helped convince me to start the miracle diet that I was so dubious of at first!! You deserve tremendous credit for helping to save my daughter's mind & future!! Thank you Thank you Thank you!!

Most of all my precious Katie is my number one hero for all that she has endured while still having the biggest heart you have ever seen in a little girl! She is my greatest inspiration and reason d'etre!!

[stilldancing_98]

That was abslutly heart wrenching. When I read things like this it gives me energy to move on with my epilepsy and love my child so his epilepsy will be easier. He was just in the hospital. Thank you so much. You are gifted. And blessed. Teresa

[LuvMyTwins]

Without a doubt, my hero is my husband. He is a kind man with a generous heart. When we met, I was a scared, insecure college student who was hiding a secret from everyone. With his love and understanding, I slowly came out of my shell to where I am today. It's been a long process and he stood by me right away.

He nursed all of my insecurities (again) when I became pregnant with twins---then went even further when the twins came 3.5 months early and were put on life support (they're grown and healthy now).

Yet, beyond the issues that I have with both seizures and auras, I found his true ability away from me. We had been dating for only 3 years when my mother was diagnosed with cancer. At the time, I was living 1.5 hours from him. He would come, during the week, to help me take care of my mother. Near the end, he was there nightly. It is truly because of him that I not only made it through an emotional period but also made it through without seizures.

Recently, when life became unbearable due to a doctor's mistake, it was he who gave me "tough love" to recover. Through his support and encouragement, alternative forms of therapy are working to create a better life for all of us.

I have been truly blessed by this man....--LMT

[CleptaK]

This thread hasn't been added to in a while, but I'll add my hero story. My hero is my Mum.

My Mum is an unbelievable Mum. She had me when she was 36, after she was told she could never conceive. I was born at 26 weeks, and she was immediately thrust into the role of being a Mum, and a single Mum at that. I have mild cerebral palsy and have had numerous operations to assist my walking. My Mum took five years off work to take care of me until I was able to go to school.

While I was at school she was always to support me, talk to my teachers and give me confidence when the other kids would tease me because of my walking, or because of my looks. (My mother is German, and my father is Sri Lankan which meant that, come puberty, I sprouted a lot of facial hair – I call it “my Sri Lankan curse”). When I became ill when I was 20, and first took leave from my University course, she was always there to support me and tell me I could take all the time I needed for my degree. When I was finally diagnosed with epilepsy at 21 (after experiencing seizures since childhood) she was always there for support, to meet with doctors and just let me know that it's ok if things don't go as planned.

Now, I'm 23 (almost 24) and I'm not working or studying because of my epilepsy. Even with that, my Mum still encourages me and believes in me – even when I've lost all faith in myself. I don't know what I'd do without her. She's my best friend and my rock. I am so lucky to have her in my life.

In another way, another hero is this site. I haven't been on here for long at all, but in that time I've found that there are others experiencing what I experience and to me that is a great relief – at least I know I'm not mad or imagining the seizure experiences I have! So, thank you to all those who work and contribute to the site. You're all simply amazing.

/end corny post here :-)

Hoo-roo, CleptaK

[BuckeyeFan]

Thanks for sharing your hero with us CleptaK. This is what this thread is all about.

Our heroes come in so many forms. Sometimes it is the physical actions, sometimes it is the mental support, and sometimes it is the unmeasureable emotional support so many of us need.

Your Mum sounds like a very strong person.

[seizingbeauty]

My life story is a bit of a soap opera. In saying that I have learnt that some of my worst experinces have brought some of the best people into my life.
My first hero is a high school teacher. I had been adopted when I was 4 by my aunt and uncle. They never expected/wanted to have children but felt it was their duty to take me in. He was a physically abusive BLEEP. My teacher realized what was happening and helped me get in contact with Family Services. She stood by me every step of the way. Without her I would not have had the courage to stand up to him. At the time I didn't know I was adopted and when I found out she helped me deal with the emotional train wreck that my life turned into.
When I aged out of the foster system I ws not mentaly ready to deal with the resonsiplity of taking care of myself. I landed myself in a bad spot. The story behind that is long and unpleasent but to say the least I couldn't see a way out. A friend introduced me to the man who rescued me. He put himself indanger to save some stupid chick he barely knew. He was my knight in shining armor. He was the one who taught me that true love is unconditional and that REAL men don't hit. As the father of our child he was the one who held my hand as we went in circles with the doctors about my epilepsy. We are no longer together but he is still one of my best friends. I sudder to think what my life would have been without him!
Finally, there is the man of my life. He got thrown into the deep end of the pool,(never even knew he was going swimming lol). He is patient supportive understanding. He seems to know exactly where the line between caring and smothering is and never crosses it. He is my everyday hero. He leaves the house 2 hours before I am up but always brews me a cup of coffee before he goes. He calls me each morning to make sure I'm okay and that I got up. I am not a morning person After having my daughter I found out that I couldn't have any more children. He has never made an issue of it and always said that if we want when we're ready we can adopt. He has handled my seizures, mood swings, "issues", job losses, family, and everything else with quiet class. When I think of him the song " Let's hear it for the boy" plays somewhere in the back of my mind
I may not like everything thats happened in my life but I can't complain because each road brought me to people like these!

[vapour]

In my journey so far. God for keeping me.

My church family who intervened and paid for me to see an epileptologist

my epileptologist.

Right now with my situation being sort of out of control my friends from church who are letting me stay with them until I get back on my feet.

Hopefully I will be able to come back and say how awesome UCLA are going to be, I am in there with psych and waiting for neurology so my case is all under one roof.

[Meetz1064]

Cleptak and SeizingBeauty. Those are two sweet posts. You're both VERY lucky people!! Vapour, I hope all works out well for you!!

[seizingbeauty]

Cleptak and SeizingBeauty. Those are two sweet posts. You're both VERY lucky people!!

Meetz,
I count my lucky stars everyday! Sorry it was "just a little sappy" but it was a hard lesson to learn that a cup of coffee and a phone call are worth more than a big house and pretty car.

[PhylisFeinerJohnson]

My hero was my grandfather...the only one who believed in me and thought I could do anything I set my mind to. To everyone else, I was just "damaged goods."

[Cinnabar]

My hero was and will always be my 92 year old uncle, John, who passed late last year. He was a brilliant and honorable man who graduated Harvard University and then went on to service our country in the Armed Forces where he was soon promoted to Lieutenant. Afterwards, he sailed around the country on his yaht playing professional chess tournaments for 15 years! During this time he studied Eastern and Western religions on his boat. I can visualize him turning a page as the sun set. His company, God. He settled on being an Anglisist and introduced me to C.S. Lewis.

In my twenties, before the computer rage, we would write to each other every two months for years. (I've saved all of his letters which are yellowed by now.) Then the computer. I urged him to buy one and we were steady e-mailers. When I could afford it I would fly down to Florida to visit him and we'd sit in his apartment and talk for hours on end about authors, philosophy, religion and sneak in some family gossip.

Despite all the mistakes I've made in my life, he was the only one who never judged me. He was my mentor. He guided my writing, he shared his wisdom, he uplifted me spiritually.

There is no gap in my heart because I know he's there. I will never meet a man coming close to him. In so many ways, he saved my spirit, my life.

He once told me, "Life is just the foyer to the grand ballroom" On his earn I've enscribed "Save Us a Dance".

[wichitarick]

Hi not high!
A LOT of great stories thanks.
They confirm that we are mostly GOOD people or we would not be here.
Please don,t take this the wrong way because it is well intentioned and MY thoughts. lol They have been in a serious postictal state for 5 days .
I have had a few "heroes" in my life but most of them just run of the mill folks who may not even remember me.
Mostly Bosses ,a few teachers,and some nurses and secretary's.
BUT a friend who has passed away from M.S. taught me a few things when we were going to A.A meetings together .
I AM MY OWN HERO...
Every day I get up and check for damages to myself and declare WOW cool I made it another night or wait until I come out of "it" and declare WOW I made it without to much damage .
A broken foot, a black eye , broken finger,I have seen worse I suppose.
NOT bleeding no MAJOR damage oh well .
I am my own hero.
I am an alcoholic with many years sobriety
I am my own hero, no one else keeps me sober.
I go to the clinic tomorrow for a follow up check for meds and E no one will help me or make me go if I do not want to .
I am my own hero.
I am a single father
I am doing "it" because "it "needs done, not for heroic reasons .
I fully appreciate the fact we do not have to look very far to see someone in a worse state than ourselves .
My current hero could also be a 12 year old girl, my daughter. Teresa
She is the witness to my gmal seizures now
Personally I do not have the guts to witness these and have always maintained that having them was easier than watching them especially if they are children having them.
So the folks who are the care givers of these people/children .YOU are MY hero,s also.
My daughter has sat by and witnessed me having very long gmals ,then I sleep walk and then go into a long crash time and does this without calling for help
It is not perfect and I do not necessarily like it, BUT it needs to be done.

At least for now I nominate ME Rick

[Rae1889]

your so right Rick! we are all our own heros.
I also have to nominate My Fiance for watching my go through this and staying strong. and those here at CWE for being all I have in the E world to relate too

thanks everyone

[BuckeyeFan]

I am my own hero.
I am a single father
I am doing "it" because "it "needs done, not for heroic reasons .

Some very great thoughts Rick. Doing "it" because "it" needs done is a great virtue. Too many folks stand by and wait for someone else. The "it" can be many different things, it is the doing that is so important.

People used to ask me how I could handle being an EMT with all the bad things we see. I used to tell them, at the time you just do what needs done, the bad things can be dwelled on later. We were not necessarily heroes, but we did what needed done.

I appluad you on your determination.

[stilldancing_98]

I'm finally going to college. I am my own hero now. I finally am finnishing something I started years ago.

[CleptaK]

Good on you, stilldancing! That's awesome! Good luck!

[BuckeyeFan]

I'm finally going to college. I am my own hero now. I finally am finnishing something I started years ago.

So cool. I returned to get my 2nd degree at the age of 38. The experience was so different simply due to life/work experience. I didn't learn much technically due to my years in business, but the overall time there learning with others my age was very educational.

Go get em' hero!

[gigi]

My chief hero is my husband. Today is our wedding anniversary. He is patient, kind, and loving, and has weathered the storms with my E. He always took me to the hospital when I had a seizure, and made sure I was looked after. He is a retired police officer, who has job related injuries, and rarely complains. When I went status in 2003, and they could not get my seizures to stop he indirectly helped save my life. Were it not for his "persuasive" mood I do not think I would have survived. The effort put into saving my life was propelled by his personal knowledge of my medical history, and his anger! Not to mention his love for me. It took him a long time to talk to me about that night, as it was so painful a subject for him to approach me with. He never had any children of his own, but when we married he has never wavered in his love for the kids, and now the Grandkids. I am astounded sometimes at his admiration for me. To my husband, my hero.

[knewton1801]

When we met six years ago I nicknamed Steve, Sugar Bear, because of his stature, gentleness and understanding nature. As the years have progressed, I have been blessed by those qualities plus the fact that he is a clinical psychologist, worked in college and before as a medical tech, has a photographic memory, a sense of humor, patience, and tactfulness. When we met I was not epileptic, but as a result of a brain injury, I have had to face an unexpected future and an intermittent loss of my past. Suffice it to say that my last seizure occurred at Home Depot when I was dancing to the Muzak. Sugar Bear calmly requested a wheel chair from the clerk and I regained a measure of awareness in the parking lot wondering why I was in a wheel chair. Surprisingly three weeks after that incident, he still wanted to marry. My question was, "Honey, you know what you are getting into. Are you sure you want to face this 'for richer, for poorer, in sickness and in health?' " I could not be luckier, nor could I be any more blessed. In so many senses, Sugar Bear is my hero and now his nickname has a meaning so much deeper than I could ever have imagined.

[stilldancing_98]

I am currently out of school right now. Due to epilepsy.